Page 5 of 5 FirstFirst ... 345
Results 41 to 45 of 45

Thread: Living with a Ventilator

  1. #41
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,492
    Hi Andy,

    If you want to know how your breathing is doing, the “alphabet soup” (nice one ) of data is how you track it.

    As our diaphragm and intercostal muscles weaken, it affects how much we can breathe in and out, as well as how much we can fill our lungs - and those FVC, MIP & MEP tests show how we’re doing in this regard. If you want to know your figures after the January tests, you can ask for the results or even take a photo/scan of the results page.

    The data is also an early warning for NIV / BiPAP use, for those wishing to use it.

    Although MND doesn’t directly affect our lung health, a side effect of not being able to cough effectively, take deep breaths and have a poor swallow which may cause aspiration episodes is that we can’t always clear (bacteria laden) mucus and often get (recurrent) chest infections or pneumonia. This is where Cough Assist machines can be beneficial in helping lung health, as well as providing physical relief and comfort to the user.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #42
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    431
    Hi Ellie

    Okay - Thanks again

    So we have……

    Pulmonary function tests (PFTs)
    Forced vital capacity, slow vital capacity, or inspiratory vital capacity (FVC/SVC)
    Maximal inspiratory pressure (MIP)
    Maximal expiratory pressure (MEP)
    et cetera (etc)

    In case you have not noticed one of the things that I get ratty about is the exclusive / excluding nature of acronyms.

    As the next time I see the consultant I have a St Thomas's, will be in January 2020 I just asked for the latest numbers now
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  3. #43
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,492
    Quote Originally Posted by nunhead_man View Post
    In case you have not noticed one of the things that I get ratty about is the exclusive / excluding nature of acronyms.
    Yeah Andy, and I use eye gaze to type, hence the acronyms....
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #44
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    431
    Good evening

    Yes, sorry Ellie I know you communicating this way - I think you are a wonder to keep going in the way that you are.

    My alternative mask arrived in the post this morning so I will try it this evening and see how my nose fares!
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  5. #45
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,492
    How's the macho nose doing with the new mask Andy?

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •